I don't know if I shared this story with any of you. But my first weekend back on the night shift after my mom died a coworker came up to me and told me there was a lady on the oncology ward that wanted me to come visit her. She just learned she had NSCLC the tumor was wrapped around her airway so they told her surgery was out and radiation and chemo were her only options but it would only be pallitive treatment. They started her on radiation right away and were puhing chemo at her but she was not sure she wanted chemo as they said it would not save her life.

My coworker had told her about my mom so she wanted to meet me. After work I went up and met her and she is someone I liked instantly. We talked for about 45 minutes. Then when I came back the next night I brought her a list of websites and wrote down the names of things like cyberknife, Tarceva, avastin for her and her family knowing it would save them hours or research. Her two adult kids were there. ( she had written down some of the things herself when we had talked that morning) and they had already contacted Stanford to ask about Cyberknife . It was a Saturday but Dr. Chang was there and told them what he thought. He had been so helpful when I first researched it for my mom. Great doctor! :)

Anyway it turns out when the oncologist had stopped by that day she asked him about some of the things and he was not happy that someone had given her this information! She was still not wanting chemo and he pretty much said he would not try Tarceva without doing chemo first! I know there are some doctors that now will but so many are still insisting on Chemo first. I told her my mom did chemo first and while it was not fun it was not the horror story we think chemo is. I left her room rather mad that doctors get angry when their patients research their treatment options so they can make intelligent decisions and not just follow the doctor blindly! It does not seem right. Patients need to be informed and to have a say in the treatment.

Her story brings me back to the boiling point where they tell a patient" I can not cure you but can try to buy you time. But only if we do it my way. You don't want chemo..well then no Tarceva for you!" Despite the fact some that did Tarceva first and saw results and are still seeing results months later and have not had any chemo so the quality of their lives has been much greater! ERRR!!

For those of you that followed my mom's story you may remember earlier last year I asked about Avastin and her doctor refused it saying it might cause a bleed in someone her age. He made that decision and did not give one moments thought to the fact that Hey the cancer is going to kill her, maybe the Avastin will buy her more time and if not and if it does cause a bleed that kills her what has she really lost a few Months? Isn't the risk of maybe having it work worth it? More important shouldn't the decision to take that risk belong to the one taking it when you are dealing with a terminal cancer in the late end stage? It is different when they are saying we can try for a cure but when from day one you are told "we can not offer you a cure" shouldn't you be allowed to take a risk? The worst that can happen is you may die but hey they told you you will die if you do it their way too!( this is like an alternative treatment my mom asked her doctor about his reply was Don't do it it might make you sick, it might not work and yes it might kill you" My reply to him was "oh you mean it is just like chemo." He did not see the humor but those are the same truths about chemo!) It seems to me the survivor stories I have read have involved mavrick doctors that are willing to take some risks with willing patients and push that treatment envelope a little doing things a little dufferent then protocol. I have a burning passion about this topic ! ( maybe you can tell?:p )

I left work that weekend knowing that though my mom's battle is over, I am still there to fight lung cancer and assist those that need help.:D JanMarie

Seraph

02-05-2007 09:13 PM

Re: A lady with lung cancer

I agree with you about patients having input into their treatment, but Drs will be much happier about that if the patient who takes the risk does not have relatives who will sue them when it doesn't work...

aggieTs

02-06-2007 06:38 PM

Re: A lady with lung cancer

Bravo to you Janmarie!! Losing three members of my family to cancer and to see the tiptoeing around Drs that goes on makes me crazy. The patient should always be told the truth and give them the options good and bad ,but let THEM make the decisions about their treatment or non treatment! I saw my 46 yr old sister miss a trip to Disneyworld she wanted to take with her 2 small girls , because her Dr would not tell her she was terminal! She had chemo and in her weaken condition went into a coma 7 days before her trip. She had the chemo for her children , but she could have spent quality time with them , instead they just remember her suffering. My biggest regret in life is not going against her husband wishes and telling her myself. So again I say Bravo to you JanMarie for giving this lady the info she needed to make her own informed decision